For several years, there had been considerable speculation and rumour surrounding some “secret” files on ME (the illness I have lived with since 1981 which is also known, unhelpfully, as chronic fatigue syndrome or “CFS”) which are held in The National Archives (TNA) at Kew in London, UK. In September 2011 I decided to use the Freedom of Information Act of 2000 (FoIA) to see if the files could be opened up. It transpired that there were two files – one from the Department of Work and Pensions (DWP, formerly known as the Department of Social Security – DSS) and one from the the Medical Research Council (MRC).

The files contain documentation about ME (and “CFS”) – correspondence, notes of meetings, background material and details of benefits claims/research applications. Both files had been reviewed and archived in the normal way during the 1990’s. Because each file contained information which was properly exempt from disclosure under the Act, they were closed to the public until 2072 (DWP) and 2071 (MRC).

I took the DWP file through several stages of appeal and in April 2012, it was opened up albeit with some redactions (see the decision notice of the Information Commissioner’s Office here). However, the MRC file was already open and had been since 2007. It was available online via TNA’s website for anyone to peruse. In other words, it had been incorrectly referred to as “secret” for five years. Again, there were some redactions but the file was open. In fact, the files were never “secret”; they simply contained confidential information. Any public authority covered by the Act is under a statutory duty to protect sensitive personal data and information given in confidence relating to ALL individuals.

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Since April 2012, I have appealed against the decisions to redact in both files and this is where I am now:

The DWP File

More of the file (reference BN/141) has been opened up as a result of my appeals. At the moment, I am not strong enough to go to Kew again and inspect each individual change but I have been sent a schedule of the changes. As I have a hard copy of the original file, I have been able to work out approximately what else has been revealed. There is still some redacted material but considerably less than before.

It would be fair to say that most of the file is now publicly available. In particular, more of the large portion of redacted material towards the end of the file (64 pages) has now been opened up. I believe that this section contains details of benefit claimants’ applications which obviously contains sensitive personal data. This has now been put back but with some parts still redacted to protect the privacy of these individuals.

My view, both personal and professional, is that enough of this file is now available that to spend further time, energy and money pursuing the final missing sections would be pointless. Most of what remains redacted will never be opened up as it reveals personal details of individuals who are probably still alive. This means that TNA has no discretion to release the information as it would be in breach of its statutory duty under the Data Protection Act 1998.

The MRC File

This file (reference FD/23/4553) was opened in 2007 (I don’t know what prompted that) and then reviewed again in 2010, after which more information was released. This is the relevant extract from TNA’s reasons for continuing to withhold some information relating to medical research proposals:

“In 2010-11 the MRC, appreciating the huge public interest into scientific research on ME, undertook a consultation exercise with the principal researchers. Following this consultation exercise a further 12 pages (see dummy card number 6 on FD 23/4553) were reunited back into the open piece to include details of the research applications (some of which includes the names of researchers). The released material relates to those who have agreed to their research proposals (abstracts) and identities being published. Section 41 therefore still applies to the remaining abstracts, four of which were redacted to remove the names of the investigators and eight which have been withheld.

To establish where the public interest lies a balancing test is required, however, as stated above there has to be a compelling argument for the public interest defence to outweigh the public interest in protecting confidence. Article 10 of the Human Rights Act 1998 (right to freedom of expression) considers the importance of protecting information provided in confidence:

“The exercise of these freedoms, since it carries with it duties and responsibilities, may be subject to such formalities, conditions, restrictions or penalties as are prescribed by law and are necessary in a democratic society

………preventing the disclosure of information received in confidence”.

It is recognised that the public interest in favour of disclosure includes such factors as transparency and accountability and that it is important for the public to understand the decisions that public authorities undertake.”

In other words, the redacted portions of this file either contain:

sensitive personal information of individuals who are likely to still be alive, or

information given in confidence as part of research funding applications and it has not been possible thus far to obtain consent from all the original researchers for that information to be released.

I think it is most unlikely – as with the DWP file – that any further useful information would be released if the decisions regarding this file were to be appealed further. The information in the file is almost 20 years out of date now. Anyone who wishes can pursue the redacted contents by using the FoIA process themselves. It is important to remember that a huge amount of information is already available from these files now.

Viewing the files

I was already well aware of the views expressed by various members of the medical profession regarding ME and its patient population. Nevertheless, I still find the contents of these files to be deeply shocking to read.

If anyone wishes to read a small sample of what is in the MRC file, then I suggest looking at the first document contained within it – the highlights (sic) of the CIBA Foundation Symposium on Chronic Fatigue Syndrome in May 1992 (4 pages). It is 20 years old; very little has changed since then, apart from better marketing and reinforcement of the imappropriate psychosocial model of treatment (at the expense of resources which should be directed towards biomedical research and treatment). The fourth page contains this illuminating statement:

The first duty of the doctor is to support as much useful function as possible and avoid the legitimisation of symptoms and reinforcement of disability (my emphasis).

It is important to bear in mind that many ME patients do not even class fatigue as a symptom of the illness but merely as an inevitable side-effect, as happens in many illnesses. Most medical professionals, on the other hand, focus only on fatigue and disregard the many other symptoms of the illness which point towards a multi-systemic disruption of the body which affects the neuro-immune and related systems in particular.

If you wish to view the MRC file then you can do so online at TNA’s website via the process set out below. Unfortunately, the DWP file doesn’t appear to have been digitised as yet so can only be viewed by visiting TNA. I will review this again in due course.

UPDATE – May 2014: the site has been upgraded and is now much more user-friendly. To find details of the files just go straight to the “Catalogue” section of the TNA’s website, enter the file reference (BN/141 or FD/23/4553) and you should be directed to the front page which displays the file information. The DWP file has still not been digitised but you can make a notional “purchase” of the MRC file and download it at no cost although you will need to supply your email address (but see the update at the top of this post directing readers to later posts from which both files can be downloaded directly from this blog.)

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What next?

My view is that it is now of more use to focus on establishing what other routes might be pursued to achieve proper recognition and treatment for ME patients (possibly by making use of what is already available in the files) rather than chasing up the small amount which remains closed. Working on those other areas is a slow and painful process for all of us who are working within the extreme limitations of our illness. Perhaps the odd fundraising run now and then, just as a little GET (graded exercise therapy), you understand; nothing too stressful. No? I thought not. Because we can’t.

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Elsewhere in the news…..

From the website of Sense about Science (update 2016: link article now unavailable save for this archive reference) comes the exciting announcement of their 2012 John Maddox prize for Standing up for Science:

Simon Wessely, Professor of Psychological Medicine at King’s College London, is awarded the Prize for his ambition and courage in the field of ME (chronic fatigue syndrome) and Gulf War syndrome, and the way he has dealt bravely with intimidation and harassment when speaking about his work and that of colleagues.

Simon Wessely is prominent amongst the architects and proponents of the psychosocial model of “treatment” for ME patients. Apparently, he has shown outstanding bravery for standing up to death threats and abuse from dangerous people like me. Be afraid, Simon – be very afraid. I’m a middle-aged woman with a wok and I am very dangerous.

The press release fails to point out (as, sadly, did the Lancet and the New Scientist publications) that Professor Colin Blakemore, one of the four judges, is a long time supporter of the persecuted Professor Wessely and that Professor Wessely is himself on the Advisory Council of Sense about Science. So the award appears to be more for outstanding cronyism than anything else. I imagine that Dr Clare Gerada, chair of the Royal College of General Practitioners, is also delighted by the award – in her other capacity as Mrs Simon Wessely. Woks at dawn, Clare? Or perhaps Simon is quite handy with oriental kitchen utensils himself? We’ll probably never know.

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Other challenges

Whilst I have been in the process of writing this piece (it takes me a long time), two new issues have arisen. The first was a brief discussion on Facebook regarding legal challenges and ME; the second was a direct personal challenge regarding ME issues from an old friend who is a highly respected hospital consultant. The second of these was a pretty upsetting experience but has forced me to give further thought as to how we go about tackling the endemic prejudice against ME patients in otherwise well-meaning individuals. However, as it takes me a long time to write each post (and leaves me considerably weaker each time) I will address those issues in a later posting.

Thank you Valerie, both for your work on this and your update. It’s very much appreciated. I’m sorry to hear you too have been at the receiving end of some dubious medical repartee (by the sound of it)…as you say, it IS endemic. Would that it weren’t.

Thank you Valerie once again for your emminent common sense and legal skill. I always value your opinion, work and insight. As one of the first degree nurses from Sheffield I remember a lady I nursed with MS (1981) being described by neuro consultant as having ‘significant psychological overlay’ ie she was putting it on! Unfortunately we encounter the same attitude for ME still. LB

As to challenges from eminent consultants in my experience they are the most closed minded and arrogant medics, about chronic illnesses unless of course they happen to succumb to the illness themselves or their family member does.

Outstanding work, Valerie! I think your assessment of the value of trying to get the redacted information is spot on. In your opinion, what is the most important thing we need to know from those files? What can we learn?

Jennie – in general terms, we can learn to identify the area of interest, find the process with which to unpick it and then make full use of it before making judgements. Keeping an open mind is difficult but vital to making an informed opinion (and I know that you already know this better than most).

Specifically from these files – I personally only saw more evidence of what I already knew and the same could probably be said of many members of the ME/CFS community. Probably the most important lesson to be learnt from the files is how to use this evidence to educate others in the appalling history of this illness. I’m still working on it.

Are you sure that it is correct to refer to ‘the’ MRC file and ‘the’ DWP file? From what I remember there were several MRC files, some which had been released and some which had not, and possibly more than one DWP file as well, and also a few other files. All of the files could be found by searching for ‘myalgic’ on the National Archives website however when I just now tried to search for ‘myalgic’ it brought up basically nothing so I’m not sure what happened there.

John – there may well be other files and, if they are also closed, they would all need to be subjected to the same process as these two files. I simply worked on the two I had been reading about for some time.

I find The National Archives search function to be rather cumbersome to use so I haven’t looked for any more files as my energy levels will just not permit that at the moment. I may, in due course, try to understand how to search the site more productively but that won’t be for a while yet.

First time I have found your page and its very interesting. It is amazing to have someone with your ability and background questioning what most of us would like to question (if that makes sense) I will be checking in soon to read more. Hope your energy levels improve soon, people who do not suffer from ME have no idea this feels like, but need to remember it could all so easily happen to them. Susan

Valerie, thank-you for the outstanding work with the secret files. Why did it take me so long to stumble into this blog? Probably my ME/Cfs. I have zero idea how to deal with legalities, so it’s essential I follow people like yourself.

And yes, Dr. Wessely’s award seems to be a farce, especially when he is part of the awarding organization. Makes me think we think we should set up our own self congratulatory award program. I think it’s patients like yourself and others who should be getting awards for living bravely with a disabling disease that is little understood and is generally discriminated against. And despite all that, moving the situation forward.

Just found this blog after a year of being diagnosed with ME/CFS, and before that a decade of being misdiagnosed with severe clinical depression, and treated with huge amounts of anti depressants. Not ineffective treatment though….it made me worse and suicidal.

Still struggling with having my mind back again. I know it is for the good but I do feel like an egg timer that has been turned on its head. Never realised that doctors could do so much damage.

Just getting to grips with the ridiculousness of it all, but loving the fact that I can finally feel emotions again.

I’m so sorry to hear your story, Rachel. Unfortunately it’s all too common. Mine started off in a very similar way, thirty years ago.

I wish you all the best in working on your energy levels. Yes, it’s a struggle and for that reason, you need to go very carefully. Don’t push yourself too hard; it’s the illness that’s causing the problem and sometimes there’s not much we can do about that.

Thank you, John. I wish I could say that I thought it had contributed something useful to our effort in getting proper recognition and treatment for ME/CFS. It has provided us with some historical background and proof of certain things which were said 20 years ago (or thereabouts) but, at this point, I’m not sure that it takes us much further than that.

Thank you Valerie for all your hard work-I tried assessing this a number of years ago but too complicated-also now diagnosed as having Lyme which I think is related to ME/MS/ Alkhymers etc. It is one big cover up because contaminated vaccinations and germ warfare is involved-Personally I think scientists and governments are mad or evil! or both

Thank you for your comment, Jacqui. Living with a chronic illness, which is also heavily-stigmatised, is a a huge burden and one which most people do not understand. I send you my best wishes and hope for better times for all of us eventually.